BBE_Older_Carers by International HIV/AIDS Alliance

Supporting community action on AIDS in developing countries

Building Blocks Africa-wide briefing notes

Supporting older carers Resources for communities working with orphans and vulnerable children

SUPPORTING OLDER CARERS

Acknowledgements What is the International HIV/AIDS Alliance? The International HIV/AIDS Alliance (the Alliance) is the European Union’s largest HIV-focused development organisation. We were established in 1993 as an international non-governmental organisation to support community action on HIV/AIDS. Since then, we have worked with over 2,000 communitybased organisations in over 40 countries, reaching some of the poorest and most vulnerable communities with HIV prevention, care and support and improved access to treatment.

What is HelpAge International? HelpAge International is a global network of not-for-profit organisations with a mission to work with and for disadvantaged older people worldwide to achieve a lasting improvement in the quality of their lives. With its network of partner organisations HelpAge International supports older people affected by HIV/AIDS in their roles as carers of orphans and vulnerable children and people living with HIV/AIDS and as a group at risk of infection. HelpAge International collaborated with the International HIV/AIDS Alliance in the production of this briefing note, based on its programme experience of working with older carers in a number of African countries. The names of people quoted in the text have been changed to protect their identity.

The Alliance would like to thank all those who contributed to this publication, including: Alioune Badara Sow, Alliance Nationale Contre le SIDA (ANCS), Senegal; Amelia Francisco Monjane, Vukoxa, Mozambique; Beatrice Karanja, UNICEF Regional Office for Eastern and Southern Africa, Nairobi, Kenya; Beatrice Ogutu, Kenya AIDS NGOs Consortium (KANCO), Nairobi, Kenya; Boubacar Sow, Alliance Nationale Contre le SIDA (ANCS), Senegal; Brenda Yamba, Senior HIV/AIDS Manager, Save the Children-US, Malawi; Catherine S. Ogolla, Kenya AIDS NGOs Consortium (KANCO), Nairobi, Kenya; Caroline Ndolo, Save the Children-UK, Kenya; Clara Chinaca, Kubatsirana, Mozambique; Filomena de Jesus João, International HIV/AIDS Alliance, Mozambique; Fiona Clark, HelpAge International, UK; Hermingarda Ofélia Júlio, HelpAge International, Mozambique; Immaculate Zalwango, Kamwokya Christian Caring Community, Uganda; Lazar Sagna, Alliance Nationale Contre le SIDA (ANCS), Senegal; Maisoon El Bukhari, HelpAge International, Sudan; Maria Estela Paulo, Mozambican Association for Urban Development, Mozambique; Mark Gorman, HelpAge International, UK; Mbaye Maniang Diagne, Society for Women Against AIDS in Africa (SWAA/JEUNES), Senegal; Patrick Muwulya Kakoza, Uganda Reach the Aged, Uganda; Nec Chipfupa, HelpAge International, Mozambique; Rodreck Mupedziswa, Witwatersrand University, South Africa; Rosália Mutisse, HelpAge International, Mozambique; Rosylene Mbosa, Muthande Society for the Aged (MUSA) , South Africa; Sebastian Chikuta, SCOPE-OVC, Zambia; Seynabou Diagne, Centre de Guidance Infantile et Familiale, Senegal; Seynabou Mbodj, Alliance Nationale Contre le SIDA (ANCS), Senegal; Titus Twesigye James, Uganda Network of AIDS Service Organisations (UNASO), Uganda; Vastha Kabarige, STD/AIDS Control, Ministry of Health, Kampala, Uganda; Violet Rose Nabisere, Uganda Women's Effort to Support Orphans, Masaka Branch, Uganda; Yakhya Ba, Synergie pour l’Enfance, Senegal. International HIV/AIDS Alliance and HelpAge International staff members and consultants. © Copyright text: International HIV/AIDS Alliance, 2004 © Copyright illustrations: David Gifford, 2004 Information and illustrations contained within this publication may be freely reproduced, published or otherwise used for non-profit purposes without permission from the International HIV/AIDS Alliance. However, the International HIV/AIDS Alliance requests that it be cited as the source of the information. This report is made possible by the generous support of the American people through the United States Agency for International Development (USAID). The contents are the responsibility of the International HIV/AIDS Alliance and do not necessarily reflect the views of USAID or the United States Government.

SUPPORTING OLDER CARERS

Background These briefing notes are part of a set of seven, comprising an overview and the following six topics: • Education • Health and nutrition • Psychosocial support

• Social inclusion • Economic strengthening • Supporting older carers

All these areas are important and should be considered together in an integrated response. Each briefing note provides issues and principles for guiding strategy, while drawing on best practice from programme experience. The briefing notes can also be used as background information to Building Blocks in Practice, a set of participatory tools to support communities caring for orphans and vulnerable children. These briefing notes have been developed through a highly participatory process, guided by an international advisory board. During their development in English, French and Portuguese, they have been reviewed by more than 100 people across Africa. Examples and case studies from this process have been noted in the text as coming from a 'Member of the Building Blocks Development Group’. This briefing note is divided into four main sections: INTRODUCTION An overview that explains why programmes designed to support orphans and vulnerable children need to pay more attention to the needs of the older people who care for them. ISSUES An outline of the impact of HIV/AIDS on older people and the factors affecting the well-being of older people caring for children. PRINCIPLES Guidelines for programmes addressing the needs of older people caring for children. STRATEGIES Possible ways of taking action at community level to support older people caring for children. This document was produced to encourage those working with orphans and vulnerable children to take the situation of their older carers into account and to find ways of supporting their efforts and improving their quality of life. The more successful strategies have been noted, but not all of these have been studied yet. Therefore, the strategies in this briefing note include some that have already been implemented, as well as suggestions for other strategies based on the experience of people working with older people caring for children. As such, strategies are not given in any order of priority or relative effectiveness. It is important to consider local context when judging the value of any strategy.

SUPPORTING OLDER CARERS

Introduction ‘Our grandmother is so wonderful. She helps us in so many ways. She feeds us, dresses us and brings us up properly. When we see her, we see our mother. If she were not here, we would have been scattered around other families and would not be treated in the same way. We are so grateful that she is still with us.’ Catharine, 15, the eldest of eight grandchildren, being cared for by 80-year-old, Irene, in Malawi.

‘Ms Maria Teresa of Buto Bweyogerere, in Wakiso District, Uganda, was recognised as Volunteer of the Year (2002) for taking care of 22 children affected by HIV/AIDS using her own resources. Because of her efforts, the International Volunteer Day was held at her home and in appreciation of those efforts her house was renovated, a pit latrine was built and she received some money to enable her to grow food for the children.’ Uganda Reach the Aged Association.

The United Nations defines older people as those over 60 years of age. Definitions vary, and in some cultures people over 50 years may be considered old. Sometimes a functional definition is used. Such a definition considers the ability of the person to work or cope and be independent. In general, older people work less and do less physically strenuous tasks, such as baby-sitting, giving advice, storytelling, shelling beans and peas. The ‘signs of old age’ arrive earlier in individuals who have endured poverty, hard work, frequent illnesses, malnutrition and, in the case of women, frequent pregnancies. Children often prefer to live with their grandparents who can provide them with a great deal of love and affection

The impact of HIV/AIDS on older people, and the contribution older people are making to the care of orphans and other children made vulnerable by HIV/AIDS are enormous. As HIV/AIDS rates continue to increase across the world, many parents are dying, leaving increasing numbers of orphaned and vulnerable children in the care of their grandparents and other older relatives. These older people would normally expect to be cared for by their own children, rather than nurse them until they die and then be left with another young family to look after. The enormous contribution of these older people to their families’ well-being, and the difficulties they face as a result of the HIV/AIDS epidemic, are rarely recognised. Without their help many children would have nobody to care for them. DECLARATIONS MADE AT INTERNATIONAL SUMMITS: • The Declaration of Commitment on HIV/AIDS signed at the United Nations General Assembly Special Session (2001) commits member states to implement by 2005 ‘national policies and strategies… [that] provide a supportive environment for orphans and girls and boys infected and affected by HIV/AIDS.’ It further commits governments to ‘review the social and economic impact of HIV/AIDS at all levels of society, especially on women and the elderly, particularly in their role as caregivers.’ • The Madrid International Plan of Action on Ageing (2002) also commits member states to ‘introduce policies to provide... support, health care and loans to older caregivers to assist them in meeting the needs of children and grandchildren, in accordance with the Millennium Declaration.’ • The Millennium Development Goals commit UN member states to halving, by 2015, the number of people living in extreme poverty and halting and reversing the spread of HIV/AIDS. HelpAge International/International HIV/AIDS Alliance, 2003.

‘Older people should remain integrated in society, participate actively in the formulation and implementation of policies that directly affect their well-being, and share their knowledge and skills with younger generations.’ United Nations Principles for Older Persons, 1991.

SUPPORTING OLDER CARERS

Introduction ‘Although the community regards orphans as vulnerable, they also consider children whose parents are poor as being especially vulnerable, e.g. families where few children go to school, eat only one meal a day and lack clothing, or go about half-naked.’

Although HIV/AIDS is now the greatest cause of parental death worldwide, it is not the only cause, and field-workers have found it much better to support all vulnerable children, irrespective of the cause of their vulnerability, in order to avoid further discrimination. Not all orphans are vulnerable, and many receive good care and attention. So it is important to target the most vulnerable.

Mwape G., 2003.

‘In Zambia, we were taken to a village where the orphan population was described to be out of control. As a vivid example of that, we entered a home and encountered the following: to the immediate left of the door sat the 84year-old patriarch, entirely blind. Inside the hut sat his two wives, visibly frail, one 76 and the other 78. Between them they had given birth to nine children; eight of them were now dead and the ninth, alas, was clearly dying. On the floor of the hut, jammed together with barely room to move or breathe, were 32 orphaned children, ranging in age from two to 16.’ An extract from the address by Stephen Lewis, UN Secretary General’s Special Envoy for HIV/AIDS in Africa at the official opening of the 13th ICASA Conference.

Studies report that 70 to 80% of all those ill and dying with AIDS are cared for by older parents or relatives. HelpAge International, Ageways, 2002.

‘BN has buried four of her children, dead from AIDS, beneath the bananas next to her packed mud homestead. … Two more of her children are buried elsewhere… In her 70s and a widow, [she] has come to be the caretaker of 35 grandchildren orphaned by her children’s deaths. At an age when she is expecting to be ‘laughing with her children’, she is instead searching for ways to feed her grandchildren.’ Masaka, Uganda. Menaker D., 1999.

Recent reports suggest that 16 million children under 15 years have already been orphaned (of one or both parents) by HIV/AIDS (UNAIDS/UNICEF/USAID, 2002), and that a large number of these are being cared for by their grandparents and other older relatives. The number of orphans is expected to increase by another 40 million within the next 10 years. In Uganda, one household in every four contains at least one orphan. A study in Zambia found that almost one in three heads of households were over 50 years of age and almost two-thirds were female. Over half the orphans in Zimbabwe are living with their grandparents. Most of these children live in extreme poverty. HelpAge International/International HIV/AIDS Alliance, 2003.

Normally, the extended family in Africa is able to absorb a certain number of orphans, but the numbers are now so large that many communities can no longer cope. In some families a whole generation of young adults has died, leaving no aunts or uncles to care for orphans. In some cases the siblings of dying parents are no longer able or willing to accept responsibility for the care of their nephews and nieces, leaving more and more orphaned children to be cared for by their grandparents. A recent study shows that many children would prefer to live with their grandparents after the death of their own parents. The children feel that their grandparents provide more love and affection than other relatives, which they consider more important than physical benefits (Mann G. 2003). In addition, children and their grandparents provide each other with much mutual care and support. ‘Our grandmother looked after my sister and me after our mother’s death, two years ago, but then she had a bad fall and now she cannot walk any more. Now we help her with the housework and look after her.’ Naomi, aged 14 years, Kenya, cared for by her 82-year-old grandmother.

‘It wasn’t supposed to be like this. These children’s parents were supposed to take care of me. Now they are dead and I am nursing their children.’ Akeyo, 74 years, looking after 10 grandchildren in Kenya.

SUPPORTING OLDER CARERS

Introduction ‘There needs to be a change in the attitude of health workers and other service providers, as well as a change in the policies of health and other agencies to ensure that older people have access to proper social, economic and emotional support.’ WHO, 2002.

‘Looking after orphans is like starting life all over again, because I have to work on the farm, clean the house, feed the children, buy school uniforms’, said a 65 year old man in Manicaland, Zimbabwe, who has become the main caregiver of three school-aged children. ‘I thought I would never do these things again. I am not sure if I have the energy to cope.’ A 62-year-old woman from Bulawayo, Zimbabwe, guardian of three grandchildren all attending school, summarises the worry of most grandparents when she says, ‘I am so afraid of what the future has in store for these orphans. If I were to die and leave them, who would look after them?’ ‘I sold all my land to buy medicines for my daughter. Yet, even with that money, the “doctor” said I could not buy the drugs that could “help” her. Her medicine was so expensive, making food a problem for the rest of us. She died in 1996 and now I am without my child and without land.’

Recent rapid social change, such as rural-urban migration, has left many older people economically and psychologically vulnerable, as they are no longer able to rely on traditional networks of support, and may lose contact with some of their children. Older carers are making every effort to socialise, educate and ensure the survival of the orphans and vulnerable children of their families. Every effort should be made to support them in their turn, as they may well be the last line of support preventing these children from being left to look after themselves. In caring for their orphaned grandchildren, the grandparents are ensuring that they grow up together as a family group, rather than in an institution or separated from each other in different families. This is much better for the children’s development. The relations between grandparents and grandchildren are often mutually supportive: the children often provide their grandparents with economic and emotional security, and care for them when they are ill or need special care and attention. To place the children in an institution would be worse for all concerned. Although many governments and programmes are trying to deal with the HIV/AIDS situation, the needs of older people and their ability to cope with the increasing demands made on them as a result of the HIV/AIDS epidemic are rarely taken into account. As a result, many older people have little or no access to health care and other services, nor to information or support programmes. Supporting theirefforts could make them much more effective and greatly benefit the orphans and vulnerable children in their care.

Flora, older woman from Masogo, Kenya

‘We like to dance and play, but we should help our grandmother cleaning, brewing beer and bringing water. We all go to school, except Suzy and Ali, because there is not enough money.’ Anna, aged 10, Juba, Sudan, living with her 60-year old grandmother and eight siblings, is well aware of the reality of the situation and tries to help her grandmother as much as possible.

Caring for children takes time and resources

SUPPORTING OLDER CARERS

Issues ‘In most NGOs, older people are not included as a priority and are often forgotten by donors. The only time we heard of NGOs talking about older people is when HelpAge Zimbabwe came into this area.’

Most people living with HIV are between the ages of 15-49 years. At first, little attention was given to its impact on children and older people. However, as the numbers of orphans and vulnerable children resulting from the pandemic have increased, and greater numbers of older people have been left looking after them, the effects on these age groups have become more apparent. Importance should be given to the needs and rights of older people, orphans and vulnerable children, and the laws that protect them. Giving older people and vulnerable children the opportunity to participate in designing programmes and policies intended to benefit them makes these programmes more likely to meet their needs.

Older carer, Zimbabwe.

‘Grandparents may be too old or too poor to give the children the care they need, provide their material needs, protect their rights, meet the costs of schooling and exercise the control needed to ensure school attendance and attention to school work.’

By improving the well-being of older people, programmes can improve the lives of the children in their care. This section considers some of the factors that can affect the well-being of older people, and as a result, that of the orphans and vulnerable children they are caring for.

Kelly, 2000, p 59-60.

A recent study in Juba, Sudan, showed that many older-headed households were living in poverty, on less than US$1 per day. Over half were peasant farmers, and one quarter was unemployed. Almost nine out of every ten caregivers earned no regular monthly or yearly income. Subsistence farming, gardening, babysitting, ironing and begging were the main way the caregivers made ends meet. HelpAge International/International HIV/AIDS Alliance, 2003.

A recent study in Kenya of older people whose relatives are affected by HIV/AIDS shows that, while the average minimum required household expenditure was approximately 6,800 Kenyan shillings per month (c. US$90), the average income of most of the older-headed households was only 2,400 Kenyan shillings (c.US$32). HelpAge Kenya.

This section considers the following seven issues: 1. Economic strengthening 2. Care, support and protection 3. Psychological needs 4. Stigma, discrimination and abuse 5. Health care and well-being 6. Older carers and HIV/AIDS prevention 7. The rights and needs of older carers. 1

ECONOMIC STRENGTHENING For children, the loss of their parents usually means the loss of their economic support. Similarly, for older people, the loss of their adult children can leave them without economic support. In fact, this lack of economic resources causes many of the greatest problems faced by orphans and their older carers, such as reduced access to education, health care and good nutrition. Economic strengthening is their greatest need. Lack of economic resources can make it difficult to feed and clothe children until they become independent. As a result, the children may need to work to help support the family financially. This often means that they have to drop out of school, reducing their chances in life. Older people may have been obliged to sell their property, land and other assets to buy medicines for their ill and dying adult children or pay for funerals, leaving themselves with few resources to meet their own basic needs and those of their grandchildren. Land and property grabbing by relatives can impoverish both the older people

SUPPORTING OLDER CARERS

Issues ‘I am caring for eight children and they have to have food, clothes, and medicines when they are ill; they have to go to school. My husband is working as a casual labourer and I brew beer and sell food. I get up early in the morning, make tea, cook porridge, get the kids ready for school and prepare what I am taking to market. I sit for a long time in the market and come home about 3 p.m. to prepare beer and cook dinner. I always feel tired, as I am too old to do all these things, but there is no alternative.’

and the children, making a difficult situation worse. Family members may abuse older people in various ways to obtain money or goods from them or Birth/Death Certificates in order to access children’s grants for themselves. In addition, inheritance laws often deny women access to land.

Juliana, aged 60 years, Juba, Sudan.

Caring for the sick, and for young children takes time and this reduces the income-generating possibilities of older people. This caring responsibility (for the sick and dying as well as children) most frequently falls on the women of the family because of their traditional childcare role. For example, in a study in Juba, Sudan, two-thirds of the families interviewed were headed by females. However, women, especially single women, often have fewer sources of income and face discrimination, based on their gender and age, which makes their role very difficult.

‘The situation is very desperate; I am now forced to engage in selling illegal drugs to raise money to feed the orphans. I am no longer afraid of going to jail.’ 53-year-old, Zimbabwean woman who looks after six orphans, of which only the oldest three go toschool.

‘The children are in poor health and one is malnourished. I cannot provide the needed care because I have no money and none of my relatives or friends helps me. Sometimes there has been no money and the kids were ill and hungry and I have felt that I just wanted to leave.’ Oliver, aged 65 years, living with his wife, six children and two orphans, in Juba, Sudan.

‘When the patient dies, even more resources are consumed during the funeral – animals are slaughtered and food is consumed.’ Older woman, from Ahero, Kenya.

‘I am a teacher and my husband is also a professional. Yet, by the time our son was dying, we only had 20 shillings between us.’ Community HIV Worker from Kisumu, Kenya.

‘I have one acre in my home and five acres for rice in the rice-growing scheme. But I cannot till the land as I have grown too weak.’ Older woman from Ahero, Kenya.

Older people may not be strong enough to work the land, and so are less able to produce sufficient food for themselves and their children. Spending money on more immediate needs, such as food and clothing, may leave older people too little to spend on maintaining their homes, with the result that they have inadequate bedding and shelter.

Grandparents are usually very anxious that their grandchildren should attend school, but school fees and other costs are usually a big problem for them. In addition, grandparents are not always able to attend Parent Teacher Association meetings to defend their orphan children when there are problems at school, or to make sure they do not need to pay school fees. Older people may not be informed of aid or resources available to them and so may miss opportunities for support. Many older people are not aware of their entitlements, or of those of their dead children or young dependants. In some cases, children may be entitled to endowments or other forms of financial support after the death of their parents, but nobody in the family is aware of this. Non-contributory pensions, where they do exist, are usually very small and can be difficult to obtain. Some countries have limited contributory pension schemes, to which very few people are entitled. Where pensions are available, however, they often provide a vital source of income to entire families.

SUPPORTING OLDER CARERS

Issues ‘Most older people are frail and cannot go far to grow crops. Some of us are caring for orphans who are also suffering from hunger.’

Children also need love and affection, which implies time with their caregivers. Both the older people and the children appreciate time together when they can laugh and enjoy themselves. But their carers, whatever their age, may be too tired or too busy to provide them with the affection, emotional care and attention they need.

Leria, 56, widowed with two orphaned grandchildren, Tete Province, Mozambique.

‘When my daughter was ill, I had to take care of her and her belongings, because some of her husband’s relatives were trying to take these possessions after his death. Not one of our relatives helped us. We have gone through all this alone.’

It is the responsibility of the older generation to socialise children appropriately, especially regarding morals and initiation rites, but they may be too busy with their income-generation and housework to find the time or energy for this.

Lyndia, aged 61, Juba, Sudan.

Older people, orphans and vulnerable children are often exposed to exploitation or abuse and the older carers may find it difficult to protect themselves and the children, or control them, especially if resources are scarce and the children adopt risky behaviour to meet their needs.

‘There is no way you are going to lock her in the house hungry, while men are offering her roast meat, left, right and centre.’ An older woman from Malawi, explaining why it is difficult to discipline the children in their care.

Child abuse is common, and orphans and vulnerable children often suffer psychological problems, such as depression and low selfesteem. This makes them more likely to take risks, including some which can cause them to get HIV. Their carers may be aware of the children’s problems but not able to deal with them or help them.

‘I go for a very long walk to bring firewood [six hours]. I go alone and that is why I am frightened every time I go there.’ Viola, seven years old, Sudan, explaining her difficulties.

‘I am an old woman of 70 years, taking care of 13 orphans, left behind by my seven sons. We used to own a lot of land on which my sons built their homes, so whenever I leave my home I can see their houses, mostly in ruins, as well as the graves of my sons and their wives. Thus I am often reminded of them and their deaths, and feel sad.’ Thus Rovina's psychological stress is renewed each time she sees the houses or the graves of the members of her family. UWESO, Uganda.

‘Negative social attitudes are the major hindrance preventing old people from accessing social services such as health care and justice. Old people need to be listened to and their physical and mental limitations understood. Their contributions to society also need to be valued.’ Muwulya-Kakooza, Uganda Reach the Aged Association.

CARE, SUPPORT AND PROTECTION

PSYCHOLOGICAL NEEDS The grief, shock and trauma suffered after the death of their own child or children make it more difficult for older carers to cope with the demands of caring for young children, who are suffering themselves having lost their parents. This can place considerable stress on relationships, making it difficult for both the older people and the children to cope. In addition, the age and generation gap between the grandparents and children is large and this can lead to conflicts and misunderstandings. Older people’s efforts and difficulties in caring for their children and grandchildren are rarely acknowledged, leaving them feeling unsupported and unrecognised. Grandparents may also feel shame or frustration at not being able to care as well as they would like to for their children and grandchildren. Ignorance and stigma mean that HIV is often associated with ‘bad’ or ‘immoral’ behaviour. Women are usually blamed if one of their children behaves ‘badly’, increasing the stigma and psychological stress affecting older women who have an adult child living with HIV. Men usually try to hide their emotional problems, but may also need psychological support if they have lost children. They also need help to adjust to losing their role as community leaders as they get older.

SUPPORTING OLDER CARERS

Issues ‘EC seemed like a depressed woman, who is in a great need of emotional support. She sees hardly anything positive in life and the state of her emotional life is likely to impact negatively on the children’s lives. What was surprising was that she was saying all these negative things in the children’s presence … she would not allow us to speak privately with her grandchildren. When we tried to speak to the children in her presence, they seemed greatly inhibited and would hardly speak.’

The added burden of a young family often gives the older people little time to interact and maintain contact with their peers, to enjoy themselves and relax, and find relief for their stress and worry. Worrying about what will happen to their grandchildren after their own deaths causes grandparents additional stress. Older people and young children rarely receive information about HIV/AIDS. Not understanding the illness that is killing their children or parents can increase their feelings of distress. ‘The children also have a lot of grief. They fluctuate between being happy when they are with their friends and being distressed at other times. It is difficult to tell the emotions they are going through. For some it might manifest itself through crying while others might leave school. Others may become reckless with their lives. The children do not open up about emotional issues they are faced with. I wish that some people could be trained as psychosocial counsellors and get involved in helping children with their emotional problems.’

Mwape G.K., 2003, Zambia.

‘I am emotionally hurt when I look at the orphans. When the orphans cry, sometimes I cry along with them.’ 73-year-old-man, Bulawayo, Zimbabwe, caring for four very young orphans.

‘I love my grandchildren but I wish there was somewhere I could take them for better care. My house is leaking and I am lame.’ Older carer, Kenya.

‘People living with AIDS lack love and understanding from their family members. Most of the victims are blamed for being infected. These people need love and care from their family members to enable them to live a longer and happy life.’ Female gender activist whose son died as a result of AIDS, Kenya.

‘I wish I had met MUSA before my daughter’s death in 2001. My husband and my children treated her like a leper. As her mother I had no choice. They did not even want me to keep her food in the refrigerator.’ An older person from MUSA’s outreach programme during a training session on HIV/AIDS, South Africa.

‘I am facing a hard time. I am repelled by my family and the children keep telling me about the relentless comments they hear from their peers because of their parents’ illness and death.’ Szerina, aged 60, Juba, Sudan.

Headmaster, Zambia.

STIGMA, DISCRIMINATION AND ABUSE Violence, abuse, discrimination, exclusion from community activities and even accusations of witchcraft can leave older carers feeling particularly vulnerable at the time when they most need community support. This can result in them being ostracised or suffering serious physical harm or even death. Society often stigmatises family members because of their association with a person living with HIV/AIDS: for example, an old woman who washes the wounds of her adult son may be considered to be in need of cleansing. People visiting the home of a person living with HIV/AIDS may refuse food or drink, believing it to be contaminated, or refuse to visit the house altogether. Older people find this refusal of their hospitality very distressing. Stigma and discrimination make it difficult for parents and children of people living with HIV/AIDS to talk openly about the issues they face and seek appropriate support. ‘I went to my relatives to seek help but they seemed to blame me for the death of my sons and told me that the orphans would also catch HIV.’ Janet, a 70-year-old woman from Kenya, who lost four of her sons to AIDS in one year and is now taking care of five grandchildren.

SUPPORTING OLDER CARERS

Issues ‘Nursing staff attitude towards us is very negative. They ignore and verbally abuse us. My child died on the stretcher, while waiting for them to attend to us.’ 50-year-old woman, from Mashonaland East, Zimbabwe.

‘I don’t go to school because I am ill and my grandfather thinks I may lose my way to school. If my father was here I would go to school.’ Victor, 12 years old, Juba, Sudan, has epilepsy and his grandfather is too old to take him to school every day. Fearing that Victor may get an epileptic attack on his way to school, his grandfather decided to keep him at home.

‘The person with AIDS is very sick and at times loses his/her mind. When this happens it becomes impossible to provide effective care as the sick person may be abusive and violent.’ 59-year-old, Zimbabwean woman who cared for her dead children and is now caring for seven orphaned grandchildren.

HEALTH CARE AND WELL-BEING The health of older people is often seriously affected by the stress, both physical and emotional, of caring for their terminally-ill children and their young grandchildren, who may be also HIV positive and need special care. The older carers may not know about or be able to practise simple preventive measures (for example the use of gloves) while handling their sick children. Lack of clean gloves, blankets and clean running water nearby may expose them to the risk of infections, including TB, diarrhoea, and other infectious diseases. Older people may not have enough food for themselves or their children to maintain reasonable levels of health and nutrition. They may be ill or exhausted from looking after children and grandchildren but may not have access to health care due to distance, and the high costs of health care and transport. Prejudice and discrimination within the health services against families affected by HIV/AIDS may also make these families reluctant to seek health care when necessary. Traditional healers are often more accessible to older people, but some do not have up-to-date and accurate information on issues such as HIV/AIDS. Age also accelerates the progression from being HIV-positive to having AIDS. Good health care including anti-retroviral drugs can keep parents and other carers who have HIV alive and active longer.

A welcoming health worker makes a visit to the clinic much more pleasant for this grandmother and her grandchild

SUPPORTING OLDER CARERS

Issues In Western Europe and the US, over 10% of recently reported AIDS cases are in people over 50 years, with women predominating. Nearly 5% of HIV positive cases in Thailand are people over 60 years of age, but in general there are few statistics referring to people beyond childbearing age. ‘[Older women] must be taught ‘safe sex’ practices. I don’t want them to make the mistake I did and then join the increasing numbers of HIV-infected. It’s no fun being ‘senior’ and living with the virus.’ Woman diagnosed HIV-positive at age 50, Kenya.

‘As older people, society considers us more knowledgeable about certain issues; our grandchildren and people in general will listen to our words of wisdom. We want to be part of the prevention of HIV/AIDS.’ Older women, in Zimbabwe.

‘They are the ones looking after the orphans. If they are taught about HIV transmission, they could be instrumental in teaching about HIV/AIDS prevention.’ Head-teacher, Middle School, Katuba, Zambia.

‘Before this training, I thought HIV/AIDS was the concern of doctors, but later I discovered… it has become our problem and concern.’ Older community counsellor in Sudan.

Shaka, 70 years old, from Kenya, is concerned about the future of her grandchildren and is determined to educate them properly about the risks of HIV/AIDS. ‘I am still concerned about their future. I always discuss HIV/AIDS with my granddaughter, who is now in Form IV. I have told her that if she is not careful she will die the same way her mother died. We want to help our grandchildren escape the pandemic. Give us the information on the disease and equip us with the relevant skills.’ Older people at World NGO Forum on Ageing, Madrid, 2002.

OLDER PEOPLE AND HIV/AIDS PREVENTION Although older people can also get HIV, existing statistics usually only refer to people between 15 and 49 years of age. Because of stereotyping and taboos, HIV/AIDS information and education programmes do not target older people. Yet older people are often still sexually active and may face other risks such as unsafe blood transfusions. Many people think that women cannot get HIV after the menopause, whereas in fact they are more vulnerable. However, if older people are well-informed about those risks and how to avoid them, they can help to protect themselves. In many societies, it is the older generation that educates the young and preserves family traditions, placing them in a good position to act as educators and counsellors for their peers and the young. However, some cultural beliefs, religions and traditions, including the biased socialisation of girls, can put the lives of women at risk, make their lives more difficult and make them poorer. Some older people believe in witchcraft and negative traditional practices, which they may continue to encourage unless well-informed of the risks involved. If they were well-informed, older people could greatly influence their peers and younger generations on how to protect themselves and avoid risks. Older people could contribute enormously to HIV/AIDS prevention and education through health promotion and counselling. A small proportion of people aged over 60 have HIV/AIDS. They need treatment and information about how to look after themselves and not pass on the virus. They may have contracted HIV recently or many years previously without realising. However, some of the symptoms of HIV/AIDS can resemble those of ageing, for example weight loss or loss of strength. This mean that older people often do not suspect that they might have HIV/AIDS and so do not go for testing or treatment. ‘My husband insisted on marrying a woman who was known to be HIV positive. When I refused to participate further in unprotected sex, he chased me away and I had to leave my children. When he died three years later, I came back home to find our property sold and now I have to bring up the children with nothing.’ Woman from Muhoroni, Kenya.

‘When I married my husband in customary law, he allowed me to attend the church of my choice. One day he told me to stop going to the church and to attend his ancestors’ church where men were allowed to marry more than two wives. Within six months he married a younger woman whose husband is alleged to have died from AIDS.’ Older person KwaDabeka area, South Africa.

SUPPORTING OLDER CARERS

Issues Sometimes older people recognise that certain traditional practices are harmful but feel that they must be followed for the good of the community. Condemning these practices outright often just leads to them being practised in secret. ‘There are some things that we have to do as a community, and if we do not do them, we suffer the consequences, sometimes up to our children’s grandchildren.’

THE RIGHTS AND NEEDS OF OLDER CARERS The rights, roles and needs of older people are rarely taken into account in government policy, legal documents or programmes to reduce poverty. Programmes designed to meet the needs of older people and those of orphans and vulnerable children rarely reach everyone they should reach. Older people, orphans and vulnerable children are often ignorant of their rights and needs, as are other members of the community. Even when they are informed they can often do little to protect or obtain their rights.

Old man from Kano, Kenya.

There is a need for a progressive legislative framework for the protection of all those rights that are intended to help vulnerable older people and children - particularly, but not only, in relation to HIV/AIDS, including inheritance rights, income support and the reduction of discrimination.

SUPPORTING OLDER CARERS

Principles and Strategies This table summarises the principles and their related strategies, which are discussed in more detail in the next two sections. PRINCIPLES

STRATEGIES

Recognise the impact of AIDS on older people, and support the actual and potential role they play

Raise awareness of the needs of older people, and the actual and potential role they play

Work at policy-making and community levels, encouraging collaboration at every level

Ensure that policies, laws and programmes cater for the needs of older people

Target the most vulnerable older people and families with economic support

Provide economic support

Provide appropriate psychosocial support for older people

Provide psychosocial support

Promote social inclusion

Encourage social inclusion

Protect older people and vulnerable children from abuse

Take action to protect older carers, orphans and vulnerable children

Support access to education and training

Encourage access to education and training, including reducing childrenâ&#x20AC;&#x2122;s workload

Improve physical well-being, nutrition and health, and prolong the lives of older carers

Take action to improve health and nutrition

Encourage good inter generational relations in order to support HIV/AIDS prevention work

Work with older people to reduce risky cultural practices and promote HIV/AIDS prevention

10. Involve older people and vulnerable children in planning programmes designed for their benefit 11. Monitor and evaluate all programmes 12. Build on and strengthen what communities are already doing

10. Spread good practice at family, community and policy level

SUPPORTING OLDER CARERS

Principles This section outlines 12 principles that can help guide programming in support of older carers: 1

RECOGNISE THE DIRECT AND INDIRECT IMPACT OF HIV/AIDS ON OLDER PEOPLE, AND SUPPORT THE ACTUAL AND POTENTIAL ROLE THEY PLAY This is the first step in making sure that all HIV/AIDS policies and programmes take the emotional, economic, practical, legal and information needs of older people into account. Older carers are looking after their sick adult children and their grandchildren after their parentsâ&#x20AC;&#x2122; deaths. In so doing, they are making an enormous contribution to their families and society, often at great personal cost. This contribution needs to be recognised and supported so that these older people can continue to keep their families together and look after the children in their care.

WORK AT POLICY-MAKING AND COMMUNITY LEVELS, ENCOURAGING COLLABORATION AT EVERY LEVEL It is important to work at community level to ensure that the results are felt directly within families and communities. However, it is also important to work on policy and programming levels. A good legal and political framework can greatly support and protect the rights of vulnerable groups, and facilitate further programming to support them. It is the government's responsibility to supply basic social services to all older people, orphans and vulnerable children. NGOs can only support and influence them in this.

TARGET THE MOST VULNERABLE OLDER PEOPLE AND THEIR FAMILIES WITH ECONOMIC SUPPORT It is important to target all vulnerable families and ensure their survival, whether they are affected by HIV/AIDS or not. Only targeting families affected by HIV/AIDS can lead to increased stigma and discrimination. Better data collection about the situation of older carers and vulnerable children would allow better targeting. It is important to help vulnerable families become as economically independent as possible. Vulnerable families often do well with some support in income-generating schemes rather than hand-outs. Non-contributory pensions have also been shown to play a vital role.

PROVIDE APPROPRIATE PSYCHOSOCIAL SUPPORT FOR OLDER PEOPLE, WHO HAVE LOST CHILDREN, THEIR FAMILIES AND THE CHILDREN IN THEIR CARE Psychological needs are often neglected because physical needs are more obvious, but many families affected by HIV/AIDS suffer great

SUPPORTING OLDER CARERS

Principles psychological stress. There is a great need for psychological support for older people and children. Children are affected by the illness of their carers from an early stage, and if it seems the childrenâ&#x20AC;&#x2122;s older carers may be dying soon, the children will also need to prepare for this. 5

PROMOTE SOCIAL INCLUSION Stigma and discrimination are among the most difficult things that older people vulnerable children have to face. They are often the result of fear, but can also be due to certain moralistic attitudes. It is important to make every effort to reduce discrimination and stigma, and to integrate older people and children into the community as far as possible. 6

PROTECT OLDER PEOPLE AND VULNERABLE CHILDREN FROM ABUSE Both older people and vulnerable children are at risk of abuse of many kinds because of their relative weakness. The community can help to protect older people and the children in their care.

7 Listening to vulnerable children is a very important part of counselling

SUPPORT ACCESS TO EDUCATION AND TRAINING Many orphans cared for by older people are forced to drop out of school because of lack of school fees. Help children go to school, including pre-school, to increase their chances in life and to allow some relief to older carers. Support access to secondary and tertiary education, not just primary education.

IMPROVE THE PHYSICAL WELL-BEING, NUTRITION AND HEALTH, AND PROLONG THE LIVES OF OLDER CARERS If parents and carers receive adequate health care, they can live and be productive for longer, allowing the children to grow up and become independent before their carers die. Reducing the number of people infected by HIV/AIDS will also help reduce the number of orphans and vulnerable children and older people left without the support of their children. Prevention programmes against HIV transmission, access to medicines, health services and health promotion are all extremely important.

SUPPORTING OLDER CARERS

Principles 9

ENCOURAGE GOOD INTER-GENERATIONAL RELATIONSHIPS IN ORDER TO SUPPORT HIV/AIDS PREVENTION WORK Giving the different generations opportunities to get to know and appreciate each other helps them understand the different roles they can play in coping with the impact of HIV/AIDS, and in HIV/AIDS prevention programmes.

INVOLVE OLDER PEOPLE, ORPHANS AND VULNERABLE CHILDREN IN PLANNING ALL PROGRAMMES AND PROJECTS DESIGNED FOR THEIR BENEFIT The participation of older people, orphans and vulnerable children in project design and programme planning will help their needs to be met appropriately.

MONITOR AND EVALUATE ALL PROGRAMMES Monitoring and evaluation are very important to ensure that the support reaches the neediest families, that the targeted children are well cared for and benefit from that support, and that older people and children are protected from abuse. Evaluation should also consider the extent to which the rights and needs of older people and vulnerable children are being respected, by comparing the actual situation with that prescribed and agreed in the Convention on the Rights of the Child and other legal documents.

Older carers and vulnerable children can be involved in planning projects which affect them

BUILD ON AND STRENGTHEN WHAT COMMUNITIES ARE ALREADY DOING Families and communities form the main support for older people and the children they care for. It is more appropriate and sustainable if programmes focus on co-ordinating existing efforts and target appropriate resources to fill any gaps.

SUPPORTING OLDER CARERS

Strategies KEY PLAYERS INVOLVED IN THE SUPPORT OF OLDER PEOPLE, ORPHANS AND VULNERABLE CHILDREN:

This section lists 10 strategies that can help support older people caring for orphans and vulnerable children. 1

• Older people, orphans and vulnerable children

Sensitise others to the needs of older people caring for orphans and vulnerable children. Encourage the community to support rather than exclude such families, and also support the children with household tasks when their grandparents are unable to do so.

• Community-based organisations • National and sub-national AIDS Council/Committees • Government bodies, such as: Ministries of Health, Social Welfare/ Development, Home Affairs (Police), Justice, Education, Agriculture and Food Security, Youth/Children’s Affairs

Sensitise traditional leaders where appropriate, as they have the potential to mobilise resources and challenge harmful practices. Sensitise communities to enhance community support and challenge harmful myths, involving all the key players mentioned below.

• NGOs involved in work on older people’s issues, children’s issues, HIV/AIDS

Use and support existing structures, such as government departments and NGOs, to sensitise communities on the issues of older people, orphans and vulnerable children.

• Local government and structures • UN agencies and other international organisations

Encourage churches and religious bodies to mobilise communities and service providers to support older people and vulnerable children.

• Traditional healers • Faith-based organisations

Encourage churches and religious bodies to challenge harmful traditional practices and beliefs. They can make a valuable contribution by emphasising those religious teachings that support vulnerable older people and children, and providing spiritual guidance.

• Human rights organisations • The media • University/academic/research institutes • Private sector.

Invite the media to support awareness-raising campaigns and to sensitise communities.

List produced in Kenya Workshop on Older Carers, September, 2003.

Lobby for a political and legal framework where the needs and rights of older people and vulnerable children are recognised and supported. Gender issues should also be taken into account.

In Zambia, a Media Network on orphans and vulnerable children has been established at national and district levels. This network advocates for orphans and vulnerable children and sensitises the public. This could be extended to raise awareness of the situation of older carers. A member of the international consultative group provided this example.

RAISE AWARENESS OF THE NEEDS OF OLDER PEOPLE, AND THE ACTUAL AND POTENTIAL ROLE THEY PLAY

Take advantage of special days, such as the Day of the African Child, World AIDS Day, International Day of Older Persons to raise awareness of the needs of older people and vulnerable children. 2

ENSURE THAT POLICIES, LAWS AND PROGRAMMES CATER FOR THE NEEDS OF OLDER PEOPLE Promote collaboration between government agencies and other organisations working with children, youth and older persons on HIV/AIDS, and ensure that all the efforts made are co-ordinated, at all levels: international, national and local. This is often the task of National AIDS Councils.

SUPPORTING OLDER CARERS

Strategies HelpAge Zimbabwe has been involved in a one-year project increasing their support to older carers of orphans in Chipinge District of Manicaland Province, through income-generating activities. This is the only project of its type in the area. Older men and women were given goats and chickens, construction materials for animal sheds, medicines and chicken feed. Advice from local veterinary and agricultural extension services was available to them. Chicken feed was not easily obtained and some chickens died but many were sold at a profit. Several goats had kids, and the droppings from both goats and chickens were used as manure to develop vegetable gardens, where pumpkins were grown. The school-children helped the older people. This project has proved suitable for the area and the capacity of the older people, and the goats proved a safer and more successful investment than the chickens. The area is rich in thorny bushes, on which goats thrive well. Despite the drought, goats are in high demand from local butchers. Local village structures allow the older people to participate in decision-making related to the project and they have become very actively involved. Their attitude towards external aid has also changed and they do not want hand-outs, but support in sustainable projects, especially as they realise that this project funding will come to an end. They are planning to sell the goatsâ&#x20AC;&#x2122; milk and expand the project, while using some of the profits to meet the immediate needs of their members. HelpAge International, Zimbabwe.

Sensitise government departments and the donor community so that they can include older people and vulnerable children in their programmes. Extra training, for example in home and communitybased health care, counselling, and succession planning may be needed. Involve older people and children in policy development and programme planning to ensure that their needs are understood and reflected in all policies and programmes. Sensitise and build capacity in national and international NGOs, faith-based organisations and international development agencies and donors on the role and needs of older carers of orphans and vulnerable children. Encourage local NGOs and community-based organisations to act as pressure groups to ensure the implementation of policies in support of older people and vulnerable children. 3

PROVIDE ECONOMIC SUPPORT Initiate and support income generation and other schemes to increase the income and assets of poor, older people, at a sufficiently early stage, before a crisis point is reached. Such schemes increase not only income but also the self-esteem and status of older people. In setting up such schemes, involve the older caregivers in choosing and planning the projects to be undertaken, and take into account cultural aspects, gender issues, power relations, the amount of extra work involved and who does it. Before starting income-generating activities to support older people and their families, make sure that the older carers are healthy and active enough to carry them out, or that the children are old enough to help them without affecting their school work. Provide training to allow older people to cope with new demands, for example, resource management and business management. Provide vocational training for those children who have stopped going to school. Involve the children in the income-generating activities, especially those such as community gardens, where they can learn the skills involved and use them in the future. This will allow them to help their older carers and carry on themselves if necessary. Funds and soft loans for orphans and vulnerable children can relieve some of the pressure on older relatives who care for them, by

SUPPORTING OLDER CARERS

Strategies In Tete Province, Mozambique, community credit committees run by older people and community members have so far supported over 300 older carers and young people – two-thirds of them women. Funds have been used to set up small businesses, for example trade in small animals, used clothes, fresh-river fish, traditional beer-making, local foodstuffs (such as tomatoes and green leaves). Some older people have also been trained in basket-making, pottery, knitting and shoe-making.

providing the necessary cash for the children’s material needs. However, these need to be administered carefully to ensure that they reach the right people and are used for the best interests of the children.

The credit committee allocates funds to projects that benefit the community. Interest made on the funds is used to support the elderly and most vulnerable community households. Most of the older carers who received funds bought school items for their orphans, paid hospital or treatment costs where needed, or made visits to family members elsewhere.

Help families to obtain necessary documents, such as birth certificates, so that benefits and other entitlements can be claimed.

Amina, aged 65, has looked after seven grandchildren since the death of her daughter and son-in-law from AIDS. Amina explains what she did with the money from the credit committee. ‘We bought flour in Tete to make bread, which is the most popular food I sell. I dream of one day having a store but know that I must make profits to buy one in the future. Most of my profits now go to buy food for the children.’ Felix, 15 years old, is the only income earner in a household of seven, in which he lives with five younger siblings and his 80-year-old great-uncle. Felix dropped out of school to earn an income herding goats, which he bought with money from the credit committee. ‘We wanted to stay together after our parents and grandparents died of AIDS. I want to go back to school, but there is no money. I talk to my friends about not being bad, not stealing things to get

Promote the provision of basic supplies to older people who cannot be independent, such as food, clothing, medicines, bedding, mosquito nets, or small grants. Lobby for regular cash transfers, such as non-contributory pensions, to be made available to all older people and for an expansion of social protection measures such as grants to orphans to ensure that their needs are met.

Lobby for school fees to be waived, ideally for all children, at the very least for orphans and vulnerable children, and provide support for school uniforms and materials where needed. ‘I am 14 years old and we are two orphans left behind. My father died in 2000, and my mother in 1995. Now I stay in the Rehabilitation Centre for orphans with my grandmother. My support comes from my aunt. I also make (weave) some ropes, which I sell to get money. I only reached Class 3. My brother’s fees are paid for by Kano Plains.’ Orphan from Ahero, Kenya who was obliged to leave school because her sick parent could not pay the school fees.

Organise co-operatives, so older people can buy their basic needs at better prices and closer to their homes. Create or support existing funeral groups or burial societies to help pay for funerals. 4

PROVIDE PSYCHOSOCIAL SUPPORT Grief and bereavement counselling can help older carers, orphans and vulnerable children deal with the loss of their loved ones and face life more positively. It is important to make a clear distinction between advising and counselling. Advising, or instructing children on how they should behave, is not the same as counselling, although people may confuse the concepts. In fact, the psychological counselling people need to cope with the changes they have to face is quite different. Grief and bereavement counselling involves listening and enabling, but not necessarily advising, and requires training.

SUPPORTING OLDER CARERS

Strategies money. I must work hard to get a good life and look after myself, not to get the disease my mother and father had.’

Recognise and acknowledge the enormous contribution and the difficulties faced by older carers in caring for their families and vulnerable children, as a first step in supporting them and reducing discrimination.

HelpAge International, 2003.

In Ethiopia, where food shortages are common, an innovative scheme to support sheep-farmers has been introduced by HelpAge International and the Ethiopian Rural Self Help Association.

These older carers can provide emotional support for each other and their peers, and be influential in discouraging their peers and younger people from adopting risky behaviour. Older carers could potentially play an enormous role as counsellors and educators. Ensure that counselling is available for all older people and children affected by HIV/AIDS. Prepare timely counselling services for children who may lose their carers a second time, should their grandparents die.

The scheme is based on a traditional “hand-on” scheme where people who are relatively well-off pass the first lambs from their sheep to a poorer person. This person in turn passes their sheep's first lambs to another person. If the sheep are healthy this can continue indefinitely.

If there are few trained counsellors, train older people, teachers, social workers and other community members, so that they can help meet some of the emotional needs of other older carers and the children in their care. Trained counsellors should co-operate with other available counselling facilities to support them and to provide a referral service when more professional counselling is needed.

A committee of volunteers with help from the government veterinary department bought two lambs each for 50 people aged 55 and over (all able to do the work involved in caring for the lambs themselves or with family members who could) and provided appropriate training. After two years 165 people are now in the scheme. They have 560 sheep between them but have sold many more. Their incomes and quality of life have greatly improved.

Create support groups for older carers, orphans and vulnerable children so that they can support each other and share difficulties. Play therapy and recreation is very helpful for vulnerable children in promoting interaction among children and building self-esteem. Give older carers an opportunity to meet and support each other, both within the community and from different communities. Encourage them to talk freely and openly about HIV/AIDS and their experiences. Provide opportunities for spiritual care for all vulnerable groups, in collaboration with religious bodies.

HelpAge International Ethiopia.

ENCOURAGE SOCIAL INCLUSION Reduce the risk of stigma and discrimination, by sensitising the community to the situation in which older people and vulnerable children are living, and their needs. Sensitise the community and religious leaders to help demystify HIV and AIDS, for example by explaining how HIV can, and cannot, be transmitted. Encourage religious leaders to give a good example to their congregations by visiting those infected or affected by HIV/AIDS. Seeing this can help people feel less fearful of everyday contact with people living with HIV.

SUPPORTING OLDER CARERS

Strategies The most appropriate type of incomegenerating activities will depend on the situation and the people involved. With income-generating schemes, it is very important to analyse the market carefully as the market may already be saturated or people may be reluctant to buy certain goods, such as food, from affected households. The environment may be too aggressive for older people who may prefer to just take the easy choice. Involve the older people in planning, especially if they are experienced. Successful activities have included: basketry and matmaking, sewing, goat and chicken rearing, vegetable growing, jewellery-making and handicrafts.

Train older people and vulnerable children in life skills and inform them of their rights. Make best use of the media, mainly radio, to reach those in remote areas.

HelpAge International Mozambique.

Nakanwagi is an old lady aged 72 looking after eight orphans whose parents died from AIDS. The oldest orphan, aged 17 years, is the only source of income for the family, as all of Nakanwagi's children have died. So, UWESO (Uganda Women's Effort to Save Orphans) helped to build a new house for her. UWESO, Masaka, Uganda.

In Juba, HelpAge Sudan has developed and strengthened an outreach system of older peopleâ&#x20AC;&#x2122;s committees, health promoters and community and social workers, which ensures that the most vulnerable older people are identified and supported. The counsellors do family and child counselling and train family members in home-based care during the home visits. HelpAge International Sudan.

Meals together provide the opportunity for communicating and being together

TAKE ACTION TO PROTECT OLDER CARERS, ORPHANS AND VULNERABLE CHILDREN Inform older people and orphans about existing laws that protect them and any support available to them, such as government funds, pensions, child-care grants. Help them through the procedures and to secure correct documentation so that they can access this support. Inform older people and orphans of protective agencies that can be contacted in case of need. This will be different in every country, but examples include: the Victim Support Unit of the police and the Legal Resource Foundation in Zambia; the Legal Aid Project in Uganda; the Community Liaison Officer and the Family Protection Unit of the Ugandan Police. Help older people to protect the property rights of the children in their care, by ensuring that they are well-informed of their own and the childrenâ&#x20AC;&#x2122;s rights and know how to protect them. Involve legal professionals and community leaders in resolving issues of land security, inheritance, divorce, and other disputes. Form support groups in communities to handle cases of abuse.

SUPPORTING OLDER CARERS

Strategies In South Africa, a non-contributory pension programme reaches the great majority of poor older people (1.9 million) at relatively low cost (1.4% of GDP). The programme is financially sustainable, and attracts a large measure of political support. The 640 rand/month (ca. US$75) old-age pension is acknowledged as providing an important complement to – if not the only – income support to older people. It is a vital contribution to the household economy, securing older people’s basic needs and, in households with orphans, paying for school fees, clothes and medicines. Also in South Africa, foster-care and child-support grants are available for age-eligible, co-resident grandchildren, and these are alleviating some of the financial burden on older people and other carers of orphans and vulnerable children. However, the complicated procedures for obtaining these grants result in their having a very low uptake (about 7%). Such schemes contribute greatly to reducing poverty in vulnerable households, but in poorer countries may require international finance and technical support.

Arrange supervisory visits to vulnerable families to ensure that the neediest are being reached, that all children are adapting well to their new environment and that their carers are able to cope. The child’s well-being is a major concern in all cases. Encourage faith-based organisations to spread religious teachings that benefit older people and vulnerable children, and challenge traditional beliefs and practices that are harmful to them. 7

ENCOURAGE ACCESS TO EDUCATION AND TRAINING From the point of view of older carers, the education of their grandchildren is of great concern but it is usually a financial concern, and meeting the costs is often the greatest problem. This issue is therefore addressed in the section on economic support. However, where the grandchildren have studied more than their grandparents, the grandparents are not in a good position to help them with their studies. Capacity-building may be needed by many people in the community to help vulnerable children and their older carers. Community schools often respond better to the needs of vulnerable children, especially those cared for by older people. Another education option being piloted in Zambia is interactive radio schooling, which allows children to study with a radio, at times more convenient for them. Organise out-of-school homework clubs where children can do their homework and receive help where needed. This also provides them with an opportunity to socialise with other children who may be facing similar difficulties, which should build their self-esteem and help create support groups.

HelpAge International, 2003.

Joachim is an orphan who was trained in radio and television repair under UWESO's apprenticeship scheme. After training, he was able to open his own workshop, where he can now train other orphans. UWESO, Masaka, Uganda.

Include life skills (particularly assertiveness, communication and negotiation skills), conflict resolution skills and civic education in the school curriculum. Train those working with older people and vulnerable children in conflict management and produce appropriate training guides for this. Provide vocational skills training for vulnerable groups to prepare them for employment, and organise apprenticeships where appropriate.

SUPPORTING OLDER CARERS

Strategies Another valuable strategy to make it easier for children to continue with their education is to reduce the workload in vulnerable families:

MUSA (Muthande Society for the Aged) was started in South Africa in the 1970s in response to the needs of older people in the community, and all further developments have also been in response to perceived needs. At that time, older people were often marginalised and there were very few services for them. Four service centres where older people can take part in multifaceted programmes and get nutritious meals have now been established to help older people maintain social contacts within the community while maintaining their independence.

• Reduce the work involved in household tasks, such as collecting wood and water, by introducing low-energy stoves, windmills, solar-based forms of energy, water harvesting, better irrigation techniques and other appropriate technology. • Introduce smaller draught animals that can be handled by older people and children to replace the oxen that they cannot handle easily. • Provide bicycles where possible. • Construct cost-effective housing for older people caring for orphans and vulnerable children, with appropriate sanitation and water supplies.

For those too frail to come to the centres, home-based care is provided, to help them and family members caring for them. Training in caring for old and frail people is also provided for family members. A literacy programme has also been started and is particularly popular with older people who have not been able to acquire literacy in their youth due to the apartheid system. This literacy programme is also seen as a means of spreading useful information on topics of interest to the participants, for example, health, HIV/AIDS. In responding to the problems faced by older people, MUSA very quickly became aware of the difficulties they were facing as carers of people living with HIV/AIDS, orphans and vulnerable children. This was a new challenge and MUSA has been helping to meet their physical and material needs (food security, housing, clothing and health care, transport for health care), intellectual needs (books, school fees, uniform, shoes and school trip funds), and recreational needs. MUSA has also been providing help with antidiscrimination and legal protection (advocacy and lobbying, access to foster care grants, birth and death certificates, protection from abuse). Orphans are also

Helping older carers with tasks such as working in the garden develops children’s skills

TAKE ACTION TO IMPROVE HEALTH AND NUTRITION Lobby for the training of health professionals and social workers to include the needs, especially psychosocial needs, of older people and vulnerable children in their normal activities, to provide agesensitive services and to establish referral systems where necessary. Immunisation and other health programmes must reach all children.

SUPPORTING OLDER CARERS

Strategies encouraged to come to the centres for meals while their carers are there. Psychological needs are given priority to ensure that families can cope. Children also learn to help their relatives take their medicines in the right quantity and at the right time.

Integrate HIV/AIDS programmes into primary health care services. Involve the community in the selection of community health workers, wherever possible.

Relevant faith-based organisations are informed about the children and their support is encouraged.

Train carers to care safely for adults and children who are sick with AIDS. Such training should take place at a convenient time and place for the carer.

Ensure that AIDS treatment and support strategies recognise the needs of older people infected and/or affected by HIV/AIDS and reach them, through mobile clinics and other user-friendly structures.

Member of Consultative Team.

Strengthen links between traditional healers, conventional health services and community health workers so that they can also support older people and the children in their care. Provide training for them if necessary.

HelpAge Internationalâ&#x20AC;&#x2122;s programmes and partners in Africa have developed appropriate information and educational materials to raise awareness of the causes, transmission and effects of HIV/AIDS and of its impacts on older people. These materials are used at local, national and regional levels to target a wide audience, including older people themselves and their communities as well as national governments and international policy makers with the aim of demystifying the nature of the virus and including older people in supporting community action against HIV/AIDS.

Encourage older carers to adopt a healthy lifestyle. Mobilise resources in families and the community to meet the nutrition and health needs of vulnerable children and their carers. Train vulnerable groups in simple gardening techniques to improve their nutrition. Use the local plant knowledge of older people to improve the diet of both the older people and children. Provide home-based care for those who are no longer able to leave their homes. Train older carers and volunteers as home visitors, supplying them with gloves, medicines and other necessities, but ensure that they are not over-burdened.

HelpAge International also recognises the potential role of older people as educators who can help to bring about positive behavioural change in their families and communities. HelpAge International is working to strengthen this possibility by providing older people with the information they need on HIV and AIDS and supporting them with counselling skills. HelpAge International, 2003.

Organise Day Care Centres where some of the basic physical and psychological needs of older people and vulnerable children can be met. Volunteers can give carers a chance for a break from their responsibilities by helping take care of the children for a short time. 9

WORK WITH OLDER PEOPLE TO REDUCE RISKY CULTURAL PRACTICES AND PROMOTE HIV/AIDS PREVENTION Include older people in health and HIV/AIDS education and support programmes, instead of considering them as potential obstacles to discussions around sexual behaviour. This would allow them to participate more in prevention activities and in their own care and protection. Such programmes need to be done in an age-and culturally-sensitive way.

SUPPORTING OLDER CARERS

Strategies In many societies, older people pass on customs, traditions and information to younger generations in a culturally acceptable way. Provide appropriate HIV/AIDS education for older people so that they can pass this on to their peers and children in their care. If older people are left out of education and prevention campaigns, an important resource is being lost and the generation divide increased.

Older people can play an important role in HIV/AIDS education

SPREAD GOOD PRACTICE, AT FAMILY, COMMUNITY AND POLICY LEVEL Share good practice so that everybody learns from each other. This can be done by arranging regular opportunities to discuss and share experiences, such as through community meetings and information campaigns, story-telling and local theatre, and meetings with district health, HIV/AIDS, and development committees. It is important to document projects, and to understand the impact they have had on peoplesâ&#x20AC;&#x2122; lives, so that good practice can be widely shared.

SUPPORTING OLDER CARERS

References Barnett and Whiteside (2002) AIDS in the Twenty-First Century: Disease and Globalization. Basingstoke, Macmillan. HelpAge International (2002) Ageways. Issue 61. HelpAge International/International HIV/AIDS Alliance (2003) Forgotten Families: Older People Caring for Orphans and Vulnerable Children Affected by HIV/AIDS. London. HelpAge International (2003) HIV/AIDS and Ageing: A Briefing Paper. London. HelpAge International. Older People and HIV/AIDS in Asia – Fact Sheet. Chiang Mai, Thailand. HelpAge International (2003) Support for Older People Caring for HIV/AIDS Orphans in Kondo, Zimbabwe. Final Project Evaluation. (Unpub.) Kelly M (2000) The Encounter between HIV/AIDS and Education. (Unpublished.) Lusaka, Zambia. In: Barnett and Whiteside (2002) AIDS in the Twenty-First Century: Disease and Globalization. Basingstoke, Macmillan. Mann G (2003) Family Matters: The Care and Protection of Children Affected by HIV/AIDS in Malawi. (Unpub.) SCF. Menaker D (December 28, 1999.) Elderly are left to raise orphans: Disease’s toll stretches their limited means. Dallas Morning News. Mwape G.K (2003) The Role of Older People as Carers of Orphans and Vulnerable Children in Katuba Area of Chibombo District, Zambia. Draft Report for the International HIV/AIDS Alliance. UNAIDS/UNICEF/USAID (2002) Children on the Brink: A Joint Report on Orphans, Estimates and Programme Strategies. WHO (2002) Impact of AIDS on Older People in Africa: Zimbabwe Case Study. Geneva.

SUPPORTING OLDER CARERS

Useful resources Most resources listed here, and many others, are available to download from www.ovcsupport.net

HIV/AIDS and Ageing: A Briefing Paper, HelpAge International, 2003. This briefing paper looks at a variety of ways in which HIV/AIDS impacts on older people.

Impact of AIDS on older people in Africa: Zimbabwe case study, WHO, 2002. This leaflet looks at the issues relating to older people and HIV/AIDS in Africa.

Living Together, Mozambique â&#x20AC;&#x201C; Project Profile: How to Keep Children in School: Support the Grandparents, HelpAge International/UNICEF, 2003. This is a very brief case study of a project being supported in Mozambique by HelpAge International and UNICEF. It focuses on providing support to older carers.

Meeting on African Children Without Family Care; Windhoek, Namibia, 30 November 2002, UNICEF, USAID, FHI, 2002. At this meeting participants shared knowledge, information, concerns, experience, and possible solutions relating to alternative forms of care for children without family care in Africa.

Selected resource material concerning children and families affected by HIV/AIDS, Williamson, J., USAID/DCOF, 2001. This document is an extensive list of resource materials available relating to HIV/AIDS and children.

WEBSITES www.helpage.org HelpAge International

SUPPORTING OLDER CARERS

Notes

SUPPORTING OLDER CARERS

Notes

SUPPORTING OLDER CARERS

Notes

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First published: January 2003 Updated: December 2005